For, by, and about people with multiplicity, dissociation, and amnesia

Hello friends of the DI,

Earlier this year, I put together a project proposal for a fellowship application for a study tour. I’m very sad to tell you that my application was not successful this time, but there has been a lot of interest and excitement in the project.

I have just shared a run down of the project on my personal blog. I will update of any developments through this newsletter. ūüôā

Project Aim (ie my goal)

To explore the in intersections between mental illness, mental injury, and identity, through the experiences and understandings of the Multiple community.

This is a highly diverse community including those formally diagnosed with Dissociative Identity Disorder DID (formerly Multiple Personality Disorder), those who self-identify as experiencing multiplicity, and those with different frameworks and understandings such as spiritual possession. People’s experiences range from severe mental illness, poverty, and impairment, to multi-millionaires and founding directors of organisations. It is the perfect community for exploring how diversity and suffering intersect.

Why is Multiplicity an identity ‚Äď even a ‚Äėsuper power‚Äô for some, but a catastrophic disorder for others? What role does diagnosis, self-identification, the way we name and frame difference and suffering, and social visibility play in people‚Äôs capacity to function? Multiples have a great deal to teach us about the way we approach the human condition, especially diversity, suffering, freedom, visibility, and identity.

Massively misunderstood, stigmatised, under-resourced, and mis-diagnosed, the Multiple community is largely invisible and difficult for researchers to access. I was diagnosed with DID in 2007 but have since recovered: I no longer meet the diagnostic criteria around impairment or distress but still live as a Multiple. I founded the Dissociative Initiative, an international project, and am out about my multiplicity in my public blog, personal, and professional life. I have rare access to this community and deep insight into the challenges, opportunities, and diversity within it.

For the full project, please go here: The Multiplicity Project

Signing off for now, with best wishes and warm regards as always,

Sarah K Reece
sarah@di.org.au

Hello all!

I identify as multiple¬†myself, (learn more about me here) and apart from maintaining this network,¬†I’m also a consultant.

I’m currently contracting with the South Australian Mental Health Commission who are wanting input from as many South Australians¬†as possible to create the new Mental Health Strategic Plan. We would love to reach out to other people who experience multiplicity, dissociation, or amnesia, and our friends, families, allies, and professional supporters and make sure you are included!

There’s many ways South Australians¬†can get involved, from this quick and¬†simple online survey to a facilitated creative group or special event. It can be group or individual, totally independent or I can set up something special. All South Australians are invited to take part,

We have until the end of May! 

More info about the Commission and Strategic Plan here: SA Mental Health Commission Website

Info about the ways to talk to us here: Community Conversations, Ways to Talk to Us

ways-12

 

I’d love to hear from folks about the best ways to approach this. I’m currently working with the Pride of the South folks creating a¬†fantastic, free¬†IDAHOBIT day event (International Day against homophobia hate and discrimination for gender, sexuality, and bodily diverse people) and a little corner of my brain is thinking – how amazing would a chance to meet like that be for our community! I’d be happy to host an afternoon tea or chance to meet online if that’s easier. What do you think?

Reach out to me at sarah.reece@sa.gov.au or 0401 099 174
Or directly to the SA Mental Health Commission on  samhc@sa.gov.au or 1300 293 220

Loads of news for June

Hello, friends of the DI!

We are fortunate to have so many things going on, the network continues to grow and this newsletter takes longer to compile each month!

DI Update

At this stage we do not have enough available and interested people to form a board, so this network is continuing to be supported privately by Sarah and funded through her face painting business. Discussions are ongoing. You are welcome to make a contribution to costs too!

Our New Resources

There are now 2 face to face groups for people who experience dissociation, multiplicity, or amnesia: in Victoria, Echoes Yarra and Echoes Preston! This is a very exciting development. More details in Support Groups.

We now have our postcards advertising the DI in print again! These cost around $35 for 100 when printed on recycled paper or $25 otherwise. If you would like any, please contact Sarah, if you’re able to contribute at all to the printing costs that would be fantastic but ask for some to hand out anyway even if you can’t. Donations towards print costs can be made through my personal blog: https://skreece.wordpress.com/donate/¬†Please be sure to clearly let me know you want it used for the DI postcards. ūüôā

Postcard

News

Some of us in the DI may recall assisting Noel Hunter, a clinical psychology doctoral student in New York City, USA. From the end of¬†last year until the early part of 2015, she conducted interviews with individuals from Australia¬†and across the United States who identify with the diagnosis of dissociative identity disorder.¬†The goal was to try to understand what aspects of treatment people have found to be helpful¬†and/or harmful. Both her extensive analysis of the literature spanning the last century and results¬†of these interviews serve to challenge the modern-day accepted practices of conceptualizing¬†people’s problems in living as “disease” and then treating them in an authoritarian manner that¬†extends from this “broken” perspective. Individuals respond to trauma and chronically stressful¬†life experiences in a myriad of complex ways, and few people can be treated respectfully and¬†helpfully based on a reductionistic and disempowering conceptualization. She hopes more than¬†anything to show how the creative and sometimes destructive ways that people adapt to trauma¬†and distress can be overcome or even used to lead a productive and satisfying life. People¬†recover every day. She is one of those people. Currently, the dissertation is in its final stages of¬†completion, and will hopefully be defended and available by the end of the year. Noel also writes¬†a blog related to the topic of dissociation, psychosis and trauma at www.madinamerica.com.

Sarah has recently attended the ISPS conference¬†and was excited to note that¬†some therapies are being adjusted for voice hearers. I’m interested in the possibility of adapting these for people with multiplicity too. If the video below isn’t working for you, view it directly on youtube here.

Sarah’s Psychosis without Destruction Talk was also recently delivered in Adelaide and very well received! I am currently in discussions with many other organisations about giving talks on the same topic or about dissociation or multiplicity around Australia – in some cases I’m waiving my fee completely and just asking for help to cover travel expenses, so please get in touch if you would like me to come and speak at your organisation or group. More about my talks can be found on my website:¬†http://sarahkreece.com.au/mental-health/

Suzanne is working on her documentary about Multiplicity. She’s offered us an update: “In the last couple of weeks I’ve talked to five very different people about their lives and experiences with DID and Multiplicity. Three are in Australia and two in the US. I’ve then spent a lot of hours transcribing the audio and just absorbing what they’ve all said. Transcribing is incredibly tedious, but necessary is so you can find the sentence you want far more quickly than listening through lots of audio trying to remember exactly where its located!! I’ve done this before. It’s quicker to transcribe.

Both the similarities and differences of everyone’s stories are amazing and I’m now in the process of working out how to structure them into a documentary. At them moment I feel like I have a pile of jewels and I need to figure out how to thread them in the right order. I’ve written a rough first draft and it’ll be interesting to see how different the final draft might end up being.¬†I’ll be going to Sydney next weekend along with the other eleven people making documentaries, and we’ll spend an intense weekend of face to face learning and workshopping about sound and voice and effects and recording and microphones and who knows what else. I’m really looking forward to it.¬†Tonight, my son Dave, who is going to write some music and create some sound effects is coming to visit, and we’ll see what a first draft, and some combined creativity can generate.”

Suzanne is currently in Sydney and will keep us updated!

Events & Opportunities

There’s a new study through Towson University, looking into whether people with dissociative disorders find a web-based intervention, in combination with individual psychotherapy is more effective. The ¬†TOP DD Network study¬†is a year-long web-based educational program for patients with dissociative disorders and their therapists. To be eligible, patients must:

  • be 18 or older and able to understand written and spoken English at the 8th grade level
  • commit to doing approximately 2 ¬Ĺ hours of work per week including: watching short educational videos (between 5-15 minutes each week), completing weekly writing exercises, and practising skills exercises each day;
  • be diagnosed with Dissociative Identity Disorder or Dissociative Disorder Not Otherwise Specified/Other Specified Dissociative Disorder
  • be in treatment with a therapist who is willing to also participate by watching the videos and completing surveys
  • have been working with their therapist for at least 3 months
  • therapists can only participate with one of their dissociative clients

Enrolment in the study is now open. Click on the link for more information on their website, or send an email to the Principle Investigator Bethany Brand, Ph.D. at TOPDD@towson.edu.

The International Society for the Study of Trauma and Dissociation have their Aus/NZ regional conference coming up on 27th – 29th of November in Sydney, Aust. The¬†ISSTD Conference¬†title is “Broken Structures, Broken Selves: Complex Trauma in the 21st Century”. Registrations are currently open.

Media

Some DI members will recall Anna Van, who interviewed some of us for an article. The article has been published through The Quarry. Identity, Fractured, Anna Van. Anna hastens to apologise for “the errors and/or lack of depth. I feel a little bit embarrassed!!” but thanks us all for our help and involvement. Interactions with anyone in the media around multiplicity can be fraught and require a lot of courage on the part of us who live with it, and a lot of open-mindedness and willingness to listen on the part of those in the media – so cudos all round! Every non-sensational/hostile/voyeuristic bit of media out there is a good thing.

Links

Quote

May there be peace in your letting go and courage in your moving on.

Take care all,
Sarah
sarah@di.org.au

Hello friends of the DI,

It’s been a busy and productive couple of months, and we have some really exciting news!

Multiplicity Documentary

We have been very fortunate and will be having our first major contact with the media this year! Not just any media, but media which is friendly to our cause and informed about our experiences. Earlier this year we asked for calls for interest in helping us to create a documentary about Multiplicity and people were really keen. Well, the amazing has happened – Suzanne’s documentary about Multiplicity won one of only 12 places in the highly competetive annual Community Broadcasting Association series! It will be aired nationally around Australia and made available as a Podcast for everyone. We’re over the moon! See these links for more information, and read a call for contacts in Suzanne’s own words below:

My name is Suzanne Reece, and I‚Äôm Sarah‚Äôs mum. I work in community radio and¬†have just been granted a place in this year‚Äôs Community Broadcasting Association in¬†their Australia‚Äôs National Features and Documentary Series. This is where twelve¬†radio producers across Australia are trained and mentored to produce a¬†documentary for national broadcast.¬†I want to make a documentary about Multiplicity – from the inside.¬†I‚Äôm not officially DID, as there are certain things within the official criteria that don‚Äôt¬†apply to me. However I very much self-identify as Multiple and have functioned as a¬†‚Äėcollection of selves‚Äô from as far back as I can remember. It always felt normal to me.¬†This is an opportunity for Multiples to tell their stories in their own words, and have¬†those storied treated with understanding, sensitivity and respect. This is a place to¬†say that Multiplicity does not always have to be paired with ‚Äėdisorder‚Äô. This is an¬†opportunity for the Multiple community to speak about what‚Äôs important to them,¬†rather than be explained and defined by other people.¬†I‚Äôm hoping that many of you would like to add your voices, your experiences and¬†some of your selves to this documentary. I‚Äôm able to disguise voices if that‚Äôs¬†important to any of you to protect your anonymity. I‚Äôm also able to take your words and have them read by a¬†voice actor if that‚Äôs important to any of you.

Please email me at suzm33@gmail.com if you’d like to be part of this amazing opportunity.

DI Board and Structure

We have been meeting with interested people about the future of the DI, and drawing inspiration from a number of books and models of small scale¬†social entrepreneurship. We have made links to existing networks such as Community Health Onkaparinga. No incorporation has happened as we are still finding solutions to the problems of a board of keen but very busy people with many existing commitments in their work. Please do not be concerned about this –¬†if we cannot bring together the support to start a board, we will instead continue for now as a part of Sarah’s business. In that case we’ll be unable to seek grant money and will need to raise funds through other means, but the ‘freeze’ on projects will be lifted either way very soon and people can get involved with supporting the existing resources and helping develop more. ūüôā

New Resources

Our members are a creative bunch and often find their own ways to reach out and fill some of the gaps in the resources for and about multiplicity. Jade is one who has recently published 2 books. She is also a volunteer admin for our Online¬†Discussion Group! Here’s a little more about her:

Jade Miller is a blogger, artist, SRA survivor, and member of a poly- fragmented DID system. She desires to bring education and awareness about the reality of SRA/DID to the public and increase the number and availability of resources to survivors for healing. Jade has experienced a very diverse life, from living on an agriculturally oriented farm to an inner city apartment to brief homelessness in her more turbulent younger years. She has been in various hospitals and treatment centers for a wide variety of mental health diagnoses since the age of 12 and is now, as an adult, living from a place of continually increasing health and joy. She wishes to use her experiences to help other people who struggle. She wrote Dear Little Ones to help young alters understand Dissociative Identity Disorder, and she wrote Pieces of Me as a more personal look into her healing journey.

Events

Sarah will be offering a free talk Psychosis without Destruction at Mifsa, Wayville on May 27th.

The busy people at the UniSA Department of Rural Health in partnership with the PIR program are putting together a conference called Walk the Talk of service integration. It will be on the 25 & 26 June, in Pt Lincoln SA. Contact Sarah or watch this space for more details.

UniSA Department of Rural Health is also running a set of workshops about voice hearing called Hearing Voices that are Distressing Рa simulated training program. It will be on the 23-24 and the 29-30 June at UniSA Whyalla Campus. There are a few subsidized places available for people with lived experience or peer workers on low incomes.

Sarah will be at all of these events and would love to touch base and catch up with any DI friends there! ūüôā

Finish with a Quote

I believe in the power of laughter and tears as an antidote to hatred and terror – Charles Chaplin

Take care all,
Sarah
sarah@di.org.au

Hello friends of the DI!

Gatherings and discussions are continuing about growing the HVNSA from a network supported by Sarah’s personal business, to one run by a board. This may or may not include the DI as well, depending on key decisions that will be made over the following weeks. For your information,¬†following¬†is the message that has just been sent out to the HVNSA via that newsletter; requests for involvement and opinions apply equally to you!

There is widespread interest in our developing HVNSA network and many people keen to come on board with projects the fit their skills and passion. There has been a general agreement to hold the development of the projects off until we have settled on our new structure.¬†Those who are interested in being part of this process, please reach out!¬†If you are more interested in being part of projects as they develop ‚Äď be patient, let us know what you are keen to contribute to, and they will start as soon as we have a structure in place to support them. You can, of course, be interested in both!

We have a number of key decisions to make. Currently the HVNSA is part of Sarah K Reece‚Äôs private business. We are looking at incorporating and making it a not for profit. We are also considering the relationship between the HVNSA and the Dissociative Initiative (DI) ‚Äď a sister network founded on the same principles, but for people who experience dissociation, multiplicity, or amnesia.

One of the challenges facing us is the potential conflict between organisational heirachy and structure, and the friendship and community based values of the Hearing Voices Movement. Another is the vulnerability of funding and the need to sustain the structure through times of little or no financial support.

We have three basic options when it comes to incorporating:

  • Incorporate either the DI or the HVNSA, and run the other as a project of it
  • Incorporate only the HVNSA and retain the DI as a network supported by Sarah‚Äôs business
  • Incorporate a body distinct from both, committed to the principles of the HVM such as teaming ‚Äėexperts by training‚Äô and ‚Äėexperts by experience‚Äô together, encouraging diverse understandings of experiences and so on (for more please see our page¬†About the Hearing Voices Movement Approach) but applying them broadly to any experiences, not just voices. (To read the HVN values articulated for the DI, please see our page Our Values) This body could then run both the DI and HVN as distinct but connected networks ‚Äď and possibly expand to include other experiences down the track.

We are still seeking advice as to our legal requirements with regards to Board structure and responsibilities, one suggestion to help the organisation as a whole function despite funding gaps and so on has been to create a very small, permanent board of committed (pun intended!) people who are able to support the projects and record and preserve the work accomplished in them through the website and printed materials and so on. Others with a passion for the networks but perhaps less free time or more challenging health or life situations could be linked in as advisers to the board or as managers or team members of the specific projects they have a passion for. An upside of this approach is that it is very stable, a downside is that it can create a closed clique.

We are keenly exploring different models in an attempt to create an organic, efficient, community structure and we welcome your input!

Sarah

sarah@di.org.au

Hello and welcome to the first DI newsletter of 2015!

A lot has been going on this year. We have some new and updated resources online including:

I’d love to hear your feedback, criticism, or suggestions with these resources, particularly if you have personal experience or care about someone who does. If you don’t have access to a printer, please remember I am more than happy to print and post our free¬†Welcome Pack to you, or other pages. All the website is public content, please print, share, email as you wish. Let’s get the word out there!

We also have an opportunity to put the board back together and restore the DI to function as a Not For Profit organisation. There is currently a group of people here in South Australia who wish to grow and develop the Hearing Voices Network of SA (the other free network I support through my business). We are considering several options, one of which is to dovetail the DI and the HVNSA together and use these people to rebuild the board and relaunch the DI, creating projects and resources for both. There are some pros and cons with this possibility and I would like to hear your thoughts! Here are a couple of the benefits and risks as I see them:

Upsides

  • Similar Values & Resources:¬†The DI has always been developed from the Hearing Voices Movement approach. It’s behind our values of diversity and peer based resources, collaboration between experts by experience and experts by training, and a focus on plain language information and access to groups. So the DI and the HVN overlap considerably in values, structure, and resources, they’re just directed towards specific experiences. Keeping the networks separate doubles the workload in building resources such as phone in support, or professional referral directories, and in raising awareness about who we are and the work we do. In fact when we wrote the DI constitution we specifically included the possibility of supporting people who hear voices or have other ‘psychotic’ experiences.
  • More Support & Reach:¬†Due to so many of our members being closeted because of the severe consequences of stigma, most of the public and many of those in mental health are unaware of how many people are needing support with experiences of multiplicity or dissociation, or how severely people are affected by this huge gap in services.¬†The Hearing Voices Movement is international and widely established! This is a massive network of people to share resources and support with, who are interested in hearing and learning about us. They have an international conference every year, a presence in the media, and research to provide evidence for their approaches. They also already have people with dissociation or multiplicity in their hearing voices groups – and we could help them to provide a language and meet the specific needs of these members. That could make a massive difference in the lives of hundreds or thousands of people – far more reach than a local multiplicity and dissociation support group here in South Australia.
  • More Funding Opportunities:¬†As a Not for Profit we can organise our own funds and proritise the projects that are most urgent or achievable. We can grow much more than if we stay a part of my personal business, and we can seek out grant opportunities to fund resources.

Downsides

  • Mixing up Different Experiences: Some of us, especially those who find the clinical models such as Dissociative Identity Disorder and Schizophrenia useful may be distressed by linking services of both areas together because we are often tired and frustrated by how poorly understand both of these conditions are and how frequently they are mixed up!
  • Losing Focus:¬†All the people currently interested in becoming part of the DI have come from a background of passion for the Hearing Voices Movement. It’s possible that linking the DI and HVNSA together could see the DI aspect fall aside if those involved are inexperienced or simply lacking awareness of the need for dissociation and multiplicity resources. The DI aims could be overshadowed. (Obviously, not while I’m around!)
  • Different Areas:¬†The DI has national and to some extent international focus, while the HVNSA is a specificly state based project. This could cause conflicts in aims and projects.
  • Different Needs:¬†While some people’s experiences of dissociation, multiplicity, voice hearing, or other ‘psychotic’ experiences overlap, others do not. The two communities are not identical. In some ways they have very different experiences and needs. For example, while some people with ‘psychotic’ experiences struggle with forced treatment and hospitalisation, people with multiplicity are more likely to report being treated badly because of their ‘attention seeking behaviour’ and even being exited from services or hospital while in crisis because someone doesn’t believe that multiplicity exists. Spokespeople and resources would need to be sensitive to these differences!

What are your thoughts? We all together are¬†are the DI, I want you to know what’s going on and have a voice in decisions that may impact you.

If you would like to learn more about the HVNSA, proposed projects which could include those of us with multiplicity or dissociation, and the plans being developed there, please check out the latest newsletter over on the sister site: Hearing Voices Network: New Projects and Plans

In other news Рsome food for thought from our Facebook Group:

And a quote:

Some days you will be the light for others, and some days you will need some light from them. As long as there is light, there is hope, and there is a way.

~Jennifer Gayle

Take care all,
Sarah
sarah @di.org.au

Christmas Wishes 2014

A last word from me for the year ‚Äď thank you to all of you who have been part of this network! It has been wonderful to get to share in your year, the highs and lows, to make new friends and walk alongside old ones. A special shout out to Shelley and Jade who spent a lot of time on the DI facebook discussion group, sharing and welcoming people.

Merry Christmas to those of you who celebrate it! Especially for those us who struggle at this time of year due to trauma, loneliness, family stress, and poverty, I hope you can find some peace and hope. If not, I hope you can keep your heads down and hide out until it’s over for another year. My thoughts are with you. We are a caring and generous community that I feel deeply privileged to be part of. I’ve bought a couple of gifts that have been given in your name if you wish. We give so much to each other and in a small way are also helping to make the world a safer place for kids, and to help them communicate.

Christmas gift 14 - nets Christmas gift 14 - pencils I hope each of you are able to find ways to meet these needs in yourselves and your own communities. Much love, Sarah xx

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